Posts Tagged With: Tcell ALL

The Monster Inside

“Mom…is the monster inside of me getting smaller?”  I can still hear those words that my sweet, little boy hit me with one day as he sat at the kitchen table while I stood at the counter prepping his next dose of chemotherapy pills to give to him.

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His question was a result of a conversation that he and I had just the week before about the importance of taking medicine.

It had been our first week home after he was diagnosed with T-Cell ALL (an aggressive form of leukemia). Over the five days that he had been at Yale Children’s Hospital, he had one surgery to accomplish three things: insert his port-a-cath, have a bone marrow test, and to have the first of his many spinal taps. In his hospital room, he had IV’s hooked up pumping in antibiotics and doing blood transfusions.  He had been poked, prodded, and examined.  Over and over again, he was asked to swallow disgusting tasting medicine and for the most part he graciously acquiesced to the kind nurses.  As the days passed in the hospital, he started to feel the effects of what was happening to his little body and the hospital with its caring medical staff lost their initial wonder to him.  This hospital was not his home with his comfortable room, his cozy bed and his favorite toys.  His twin brother was not allowed to be in the ward with him. He was done and ready to leave.  And more poignantly, he had made up his mind that he was not going to swallow any more of that horrible stuff they kept giving him!

But of course the nurse asked him to swallow his next dose …and our first battle began.  

Here changed my easy-going, happy-go-lucky, little boy to the classic, small child shutting down, tight lipped, turning his head away and saying “no” to taking any more medicine. I tried to negotiate with him, my husband tried to negotiate, the nurses tried to negotiate. Nicky eventually and reluctantly did take the medicine, but clearly he was upset and exhausted by the entire ordeal.  He was never like this for me before now, and it made my heart sink to see him so stressed on top of everything else that he was going through.  It compelled me think of what I needed to do to make taking chemo meds an easier process for him.  None of us wanted a repeat of the last scene.  But the fact remained that he would clearly need to swallow multiple pills each day as that is what his treatment plan called for in addition to the spinal taps, injections and IV drips.

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Needless to say, during the first week home from the hospital one the greatest challenges was to get Nicky to take all of his daily medicine.  We did not want the process of taking all of the nasty tasting pills (think rancid battery acid flavor) to be an upsetting twice daily routine for him.  Not only did we know that taking 45 minutes to coax him into taking meds was exhausting for him, but then the chances afterward of him keeping them down because he was so upset were slim.

Trust me. We tried the many ways the hospital suggested that could disguise the medicine taste, but clearly nothing was working.

There was this one day while we were still trying to work out the kinks and to find an easier way for him to take the pills that there was a struggle brewing. What was I going to do? Nicky absolutely HAD to take these chemo drugs.   

How does one explain to a young child the importance of taking medicine to help his body while not wanting to scare him with the gravity of the situation at hand?

Then the lightbulb went on in my head.  Thank you, God!

I remembered this song that he learned at church.  So sweet.  The words say something like if you want to grow, grow, grow then read your Bible and pray everyday.  It goes on to say that if you don’t read your Bible and pray everyday that you will shrink, shrink, shrink.  There were movements to go along with the song too.  The teachers actually had the kids sing it to the parents one day after they practiced. They were such cute and proud toddlers.  Picture the group of them belting out the song and bending or squatting down lower to the ground each time they repeated the words “shrink,” and likewise, imagine them all reaching high to the sky on their tippy toes each time they repeated words “grow.”

What was the connection?  Because of this song, I knew that there was something in the back of his mind that would help him understand how getting something important done benefits one’s life.

So as I looked over at him sitting at the kitchen table waiting for both my answer and for me to deliver more of his dreaded medicine, I took a breath.  I went up to him, bent at my knees, looked him in his eyes and said to him:

“Honey, this leukemia is like a monster inside of you. Not a real monster, but like a monster.  All that it wants to do is to grow and grow and grow inside of you to make you very sick.  And I know that you do not like taking all this yucky tasting medicine, but the medicine is very strong and it will help this monster to get smaller and smaller and smaller inside of you until he is all gone.”

He really did not say much to my explanation.  He simply took his meds, and we moved forward.

About a week after my reasoning with him about “the monster,” he and I were alone in the kitchen once more. Medicine time certainly had become less stressful over the past week for more than one reason.  First of all, he was simply being such a good sport about taking his chemo and not putting up a fight about it any longer.  Secondly, we had found a way to help him to more easily swallow the pills and when swallowing them by leaving much less of the awful taste in his mouth.

I was at the kitchen counter counting out his pills, double and triple checking the dosage and the labels.  Nicky was sitting at the table waiting patiently for me.  And the question came…“Mom…is the monster inside of me getting smaller?”  I stood there blinking back the tears as my mind searched quickly on the right words to answer him with.  He may have looked calm and almost distracted in a way as he waited for me to answer, but I knew that he asked because he was concerned and needed reassurance.  I wanted to respond sincerely  and convincingly. “Yes, Honey, I said, it is getting so much smaller because you are doing a great job taking all of your medicine.”  It was the simplest and best that I could do.

That answer was all that he needed.

He never brought “the monster” up again. He always took his chemo pills without complaint even as the doses increased again and again over the next three and a half years of treatment.

His monster is all gone now.  Eight and a half years gone.  We couldn’t be happier.

What about you?  What have been some of the challenging “monster” moments that you and your family have had to work through with your child?  You are welcome to share in the comment section.

Other You Are My Sonshine posts:

A kid’s perspective on surviving cancer:https://urmysnshine.wordpress.com/2015/03/15/that-was-then-this-is-now-2/

What exactly is chemotherapy and how does one explain it to someone?:https://urmysnshine.wordpress.com/2015/02/13/chemotherapy-umbrella/

Creative ways to motivate a child to take his or her chemo:https://urmysnshine.wordpress.com/2015/01/24/must-do-can-do-chart-for-kids-on-chemo/

Laughter a caregiver can connect to!:https://urmysnshine.wordpress.com/2015/01/18/let-the-laughter-in/

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